Opinion: CDC Guideline – Not Patient Focused

Opinion: CDC Guideline – Not Patient Focused

By Terri A Lewis, Ph.D.

Terri A Lewis, PHD

Terri A Lewis, PHD

Editor’s Note: When the CDC announced its new voluntary guideline for opioid prescribing, the National Pain Report turned to one of our frequent contributors, Dr. Terri Lewis. She studies (and comments) on the U.S. health care system. As a daughter and mother of chronic pain patients, she has written on access and quality issues. Here’s her reaction to the CDC announcement:

Where to begin?

These guidelines are predicated on the notion that pain should be addressed differently based on whether it originates in a cancer diagnosis, which then supposes the necessity for palliative care models. That is a faulty heuristic.  There is no functional difference in chronic pain that originates from any source. Our biology imposes chronic pain as an organic adaptive response to injury or illness. Imposing the label gives us permission to withhold palliative treatment from one group over another, which is not ethical.  In fact there are almost no conditions of chronic pain that will not be present at the death of the individual; cancer is not the arbiter for length of life.

The damage caused by the politicization of treatment for chronic pain and co-mingling of treatment approaches with addiction models has already been accomplished – the damage is done. Walking this back will be very difficult as states are already passing laws and regulations that impose practice restrictions on primary care physicians. In some cases these are so burdensome and onerous that PCPS are refusing to serve or take on new patients with chronic pain. Patient dumping is occurring as we speak.

The guidelines and state laws provide us with directives that have no measures of effectiveness. The evidence for their application is admittedly of low quality – applying GRADE criteria to low quality evidence does not make a silk purse out of a sows’ ear.  As written, we cannot know whether they will achieve their intended effect for reducing overdose deaths – which seems to be the primary concern.  There is no way to determine whether a reduction in prescribing will lead to better patient outcomes except through monitoring and case investigation – which our scientists at CDC are loath to do. So we are still left with the very significant problem of developing evidence for the effectiveness of these regulations. The only way I see to get past this one is for patients to take control of their data and conduct their own research.

This is a tremendous opportunity to learn on many levels. The question is whether the risks to patients outweigh the benefits to the public at large.  There is almost nothing that is less fruitful or fair than forcing persons who have grave pain related conditions to live without effective care.  Is suicide more publicly acceptable when conducted by methods other than opiates? What about the ongoing family stressors imposed by caring for a loved one who is underrated for their chronic health condition?  We already know how family health is negatively magnified by stressors that increase and hasten the onset of stress related disease processes.

Is this an acceptable trade-off?

Time will tell how we truly value the projected outcomes. It shouldn’t take too long for results of these policies to reveal themselves.

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Authored by: Terri A Lewis, PhD.

There are 33 comments for this article
  1. Michael Wagner at 9:42 am

    I live in the wonderful state of Washington, where the CDC got a lot of there pain information. It is still who you know in this state if your a pain patient, I have to get this off my chest.
    December 2014 and 2015 I went to CA to see Dr. Forest Tennant hopping he had something for adhesive arachnoiditis so I could get off opiates. At the same time my primary care Doctor did my pain meds for 15 years with only a one time visit to a pain specialist . My Doctor was employed at Franciscan for 17 years , They transferred him so they could get out of prescribing opiates. He would write me 3 months of opiates at a time, very nice. I miss that.
    This was all going on while I was going back and forth to CA. The second time going to CA Dr Tennant was under the impression that I would be seeing him for pain meds, after I told him That The pharmacist said that they would only fill one opiate prescription a year. Dr Tennant said he couldn’t see me anymore as he feared WA state. During this time I called a long time Doctor friend of mine that had moved out of the area 16 years ago and told him I needed a pain specialist, he told me who he was using, So I got a appointment with there firm, but the Dr. that owned the firm only worked 2 days a week but he had another one that I could see. Come to find out this Dr. had lost his license to operate so this was the only employment he could get. When he looked at my appointment paper he see I had put down my doctor friends name. he came unglued he said that my Dr. friend was a drug pusher, I said you all are approving his patients aren’t you. He gave me a urine test and it showed I was taking triazlam and he said I needed to get off them, I said I had been using them for over 20 years and approved by many doctors, as the pain and other problems had me using them. He said take tizanidine when I go to bed and when I wake up take another, well that was no good as I couldn’t walk the next day, my legs were so week I couldn’t stand up. The next week I was back in CA and Dr. Tennant wrote him a letter that pain people like me needed that type of sleeping medicine, to clear out the spinal cord each night with sleep being a must. That dr. must have got that from, the University of WA. as I read where tizandine was good, and better than Soma. Dr. Tennant gave me a bottle of soma and a prescription for soma, which has lasted me over a year without a refill.
    I didn’t know that this Doctor friend of mine was prescribing a old friend of mine 360 30 mg’s of oxycodone per month for a neck and shoulder operation he had in. the 80’s. That’s enough for a lot of arachnoiditis patients. The last time I seen that guy he had trouble taking a 5mg of oxycodone.
    This example is something that hurts us pain people . you all might find that my other post had a little frustration from this in it.
    Hopefully you can see why my post was a little wild. With my spine pain I do have trouble concentrating and putting things together. Thanks for bearing with me.

    Best,

    Michael Wagner

  2. Martha Arntson at 3:13 pm

    There have been a lot of questions on this forum regarding “how do I collect data, patient generated data. I, for one, have advocated for every Pain Management Patient to keep their own records of not only a “pain scale” daily, but more detailed information on their pain progress (or not) daily. My own Pain Management doctor does not provide me with a chart or anything to use to chart my pain level or how I managed it. I had to find it out for myself. So, in light of that, the new post here from
    “Terri Lewis PhD
    March 27, 2016 at 10:32 pm, I will re-post: Patient-generated health data (PGHD) are health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.

    PGHD include, but are not limited to:

    health history
    treatment history
    biometric data
    symptoms
    lifestyle choices

    End quote. This only part of managing yourself as we continue to seek good pain management and involve ourselves in our own care. Thanks to Terri Lewis, PhD for her input into this complicated issue.

  3. Terri Lewis PhD at 10:32 pm

    https://www.healthit.gov/policy-researchers-implementers/patient-generated-health-data
    What are patient-generated health data?

    Patient-generated health data (PGHD) are health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.

    PGHD include, but are not limited to:

    health history
    treatment history
    biometric data
    symptoms
    lifestyle choices

    PGHD are distinct from data generated in clinical settings and through encounters with providers in two important ways:

    Patients, not providers, are primarily responsible for capturing or recording these data.
    Patients decide how to share or distribute these data to health care providers and others.

    Examples include blood glucose monitoring or blood pressure readings using home health equipment, or exercise and diet tracking using a mobile app.
    Why are patient-generated health data important?

    The use of PGHD supplements existing clinical data, filling in gaps in information and providing a more comprehensive picture of ongoing patient health. PGHD can:

    Provide important information about how patients are doing between medical visits.
    Gather information on an ongoing basis, rather than only at one point in time.
    Provide information relevant to preventive and chronic care management.

    The use of PGHD offers an opportunity to capture needed information for use during care, with potential cost savings and improvements in quality, care coordination, and patient safety.
    What role does health IT play in enabling the use of patient-generated health data?

    New technologies can enable patients to generate important data outside of these settings as often as needed and share it with their providers to expand the depth, breadth and continuity of information available to improve health care and outcomes. The increasing number of smart phones, mobile applications and remote monitoring devices, coupled with providers’ deployment of electronic health records (EHRs), patient portals, and secure messaging, offer innovative ways to connect patients and providers and to strengthen consumers’ engagement in their health and health care.

    ONC has developed brief guides for providers about using health IT to assess patient experience with care [PDF – 976 KB] and to incorporate PGHD into medical practices [PDF – 1.5 MB].
    What concerns about the use of patient-generated health data need to be addressed?

    Providers will need to build processes and allow time to evaluate whether and what information to include in the patient record, and to determine when to promote PGHD use as part of the care plan. Providers may be concerned about any potential additional burden on their workflow, about increased liability and accountability, and about patient expectations.

    Access, usability, education, health literacy, economic disparities, and similar factors can be barriers to PGHD use by patients.

    Researchers can help identify what PGHD are most useful to improve health and care processes, as well as what types of consumer and provider education and support can ease its adoption and use. Researchers can look into how best to integrate consumer eHealth tools and information into individuals’ daily lives and into provider workflows.

    Federal and state policies could address important questions about what should (and should not) be documented in medical records, how the patient’s data is shared, and what protections need to be in place, among others.
    How has ONC approached the use of PGHD so far?

    ONC has identified PGHD as an important issue for advancing patient engagement and initiated a series of activities to gain more information about its value and approaches to implementing it.

    In April 2012, ONC commissioned a Patient-Generated Health Data White Paper [PDF – 993 KB] to better understand PGHD uses, challenges and opportunities.

    ONC’s Federal Advisory Committees (the Health IT Policy Committee (HITPC) and the Health IT Standards Committee (HITSC)) built on this foundation by convening a public hearing in June 2012 to gather additional input on policies and standards needed to support PGHD. In 2014, the Committees provided recommendations about the inclusion of PGHD in Stage 3 of the EHR Incentive Programs (commonly referred to as the Meaningful Use Program), which supports the adoption and use of EHRs.

    In 2013, ONC convened a Technical Expert Panel on Patient-Generated Health Data (PGHD TEP) to identify good practices that can reduce concerns and risks and to encourage providers to implement PGHD through Meaningful Use and for purposes outside Meaningful Use. The PGHD TEP’s final report [PDF – 500 KB] and appendix [PDF – 2.1 MB] was completed in December 2013. Also in 2013, ONC commissioned an environmental scan on the issue of data provenance [PDF – 743 KB].

    In early 2014, ONC published an issue brief on PGHD and the role of health IT [PDF – 307 KB] to further define the information outlined above.

    Beginning in 2015, ONC will develop a policy framework that identifies best practices, gaps, and opportunities for progress in the collection and use of PGHD for research and care delivery through 2024. As part of the two-year project, ONC will conduct pilots to test implementation of and further refine the topics identified in the policy framework. The policy framework will consider how PGHD can be collected in a way that protects the patient and the integrity of the patient record, maximizes the provider-patient relationship, builds confidence among providers and researchers to use these data, and encourages individuals to donate their health data for research. The effort is part of a suite of projects focused on improving use of health IT among researchers for patient-centered outcomes research (PCOR). The PGHD policy framework project is a necessary step towards a long-term policy solution for the successful implementation of the PGHD requirements of the Federal Health IT Strategic Plan, ONC Interoperability Roadmap, 2015 Edition Certification Rule, Stage 3 of the Meaningful Use Rule, and the administration’s Precision Medicine Initiative.

  4. Cynthia at 5:58 pm

    Yes, duly noted. thank you. ….I have written so many letters that I don’t even know at this point how to move forward. Sounds like you are already sending your thoughts , expressed so well.

  5. Richard A. Lawhern, Ph.D. at 10:06 am

    Cynthia, you asked about forwarding my comment to others. Feel free, with attribution to me by name or to this article in National Pain Report. I have already cross-posted to eight Facebook groups focused on chronic neurological face pain (Trigeminal Neuralgia) patients and survivors (aggregate membership ~15,000, with some duplication between groups). I am encouraging others to bombard public media with appropriate and non-abusive protest over the lack of patient considerations in the CDC Guidelines revisions, as well as the near-absence of any science beyond supposedly learned opinion in the basis of those guidelines. Likewise, all are free to visit my website and use the resources there: http://www.lawhern.org

    Kind regards,

    Richard A. Lawhern, Ph.D.
    Patient Advocate

  6. cynthia at 11:31 am

    Dr. Lawhern, Thank you for your excellent response to the CDC guidelines. Do you mind if i forward it to people? including public officials? it says everything I would like to say but i don’t have the energy to write something like it. please just let me know if you object. i would never forward it without asking you first. thank you, Cynthia, age 69, severe pain 8 years.

  7. BL at 8:59 pm

    The National Pain Strategy Report is out and it seems to go hand in hand with the CDC Guidelines. Hopefully, no one thought that the National Pain Strategy would do anything to increase or protect chronic pain patients access to opioids.

    “As the NIH press release said:

    “Better pain care, achieved through implementation of the National Pain Strategy, is an essential element in the Secretary’s initiative to address the opioid epidemic. Access to care that appropriately assesses benefits and risks to people suffering from pain remains a priority that needs to be balanced with efforts to curb inappropriate opioid prescribing and use practices. The Strategy provides opportunities for reducing the need for and over-reliance on prescription opioid medications, including:
    -Improving provider education on pain management practices and team-based care in which multiple treatment options are offered – moving away from an opioid-centric treatment paradigm.
    -Improving patient self-management strategies, as well as patient access to quality, multidisciplinary care that does not depend solely on prescription medications, especially for vulnerable populations.
    -Encouraging the evaluation of risks and benefits of current pain treatment regimens.
    -Providing patients with educational tools to encourage safer use of prescription opioids.
    -Conducting research to identify how best to provide the appropriate pain treatments to individual patients based on their unique medical conditions and preferences.””

    National Pain Strategy-
    http://iprcc.nih.gov/docs/HHSNational_Pain_Strategy.pdf

  8. Richard A. Lawhern, Ph.D. at 12:52 pm

    I have recently corresponded with Karen Kaplan, the Science and Medicine Editor of the Los Angeles Times, and her colleague Melissa Healy, on some of the same issues raised by Dr. Lewis’ article above. The point of departure for what follows is an article in the Los Angeles Time titled ” Zero pain isn’t goal’ of treatment, doctors say” [http://www.latimes.com/science/sciencenow/la-sci-sn-treatment-of-pain-opiates-20160316-story.html].

    Dear Karen and Melissa,

    As promised, I have read the LA Times series “Dying for Relief”. What is truly ironic is that the series directly supports my strong opposition to the recently published CDC guidelines. The series reveals that prescription drug overdose deaths appear to be closely linked to a tiny minority of prescribing physicians, rather than to chronic pain patients as a group. Likewise, a careful reading of the revised guidelines reveals that the entire enterprise is unsupported by reliable double-blind trial results or other strong evidence beyond the opinions of the physicians and psychiatrists who contributed on the primary consultant working group hosted by CDC. Much of the evidence underlying the restriction of opioid prescription is very weak and potentially politically contaminated by a disproportionate desire to control cost, no matter who suffers.

    Also of concern in this public health policy issue is that although public commentary on the proposed standards was solicited, the responses of pain patients themselves do not appear well reflected in the resulting documents. No patients were allowed to participate in the consulting group itself. And the meetings of the consultants were held in private — a direct violation of public law requiring transparency in the CDC and FDA. CDC may yet be sued for this violation of due process for patients.

    I believe from twenty years of working with chronic pain patients as an advocate and research analyst, that the following observations are well supported by fact and should be reflected in withdrawal and significant revision of the recently released CDC guidelines on prescription of opioids to chronic pain patients.

    1. Opioids can become an addiction hazard if prescribed without appropriate patient workup, blood and urine testing, initial and sustained follow-up. However, addiction is a different medical entity from dependency for pain control. The two should not be conflated. In chronic pain where full patient recovery is deemed unlikely, dependency may be an acceptable side effect of long-term pain management to sustain the quality of life of the patient.

    2. The training of General Practitioners needs to be upgraded and verified by examination, before they are allowed to prescribe the stronger classes of opioids. Board Certification in Pain Management is useful but not sufficient, given the wide variety of conditions which may cause chronic pain, and the differences which may exist in the total care management plans of patients with different primary disorders. Particular attention needs to be given to identifying potentially toxic drug interactions when multiple medical conditions are being treated in the same person.

    3. Practices for opioid prescription in chronic (often permanent) pain need to be distinguished from those in acute (temporary) pain. Both need to be tailored to the unique challenges of specific medical conditions, rather than generalized without reference to the total health profile and prognosis of the patient.

    4. Monitoring of physicians and pharmacies needs to be automated and centralized at State and Federal level to identify inappropriate prescription practices of physicians, as well as consumption levels and combinations of pain relievers by patients who doctor-shop or who divert prescription medications to others. Accomplishment of these objectives is well within technology state of the art. Patient education may also substantially reduce risks and improve the levels of patient disclosure.

    5. Long term supervised prescription of opioids in combination with other medications is effective in tens of thousands of chronic pain patients who maintain stable dose levels for periods of years. The experience of these patients needs to be studied and distinguished from outcomes in people who spiral up on medication or in whom meds cease working entirely.

    6. In Chronic pain patients, opioids are almost always prescribed only after multiple previous attempts at pain management have failed. This category of patients should not be stigmatized and further traumatized by doctors or pharmacists who label them as drug seekers or malingerers seeking attention. Their pain is real.

    7. The medical evidence for concepts of so-called psychogenic or “psychosomatic” pain is almost totally lacking. Diagnosis of such conditions should not be casually applied, as such labels will reliably deny the patient further detailed assessment of medical conditions which the diagnosing physician has missed.

    8. Ancillary support therapy in stress management and emotional centering techniques can be constructive for some patients, some of the time, particularly in reducing co-morbid anxiety and depression. However, the medical evidence for techniques like Cognitive Behavior Therapy reveals that they are not an effective substitute for medication and should not be so viewed by medical doctors.

    9. With over 100 million chronic pain patients in the US alone, it should be obvious that increased funding and accelerated research are needed for both basic and applied medical science.

    Karen and Melissa, I urge you to rethink your support for the recently published CDC standards. In their present form, these standards are already creating an atmosphere of hostility toward chronic pain patients, and an illusion of solving the public health problems created by a tiny minority of doctors who over-prescribe and fail to manage such patients. This illusion if continued will NOT result in lower deaths by prescription drug overdose. In fact, I believe the likelihood is for quite the opposite effect as patients are driven into despair.

    I think there is ample room for a follow-up series on “the patient side of chronic pain”, to illustrate how these dangerously distorted standards are negatively affecting real people. I am in daily contact with thousands of patients and family members, and I can readily solicit people willing to correspond with you, sharing their own experience.

    Sincere best regards,

    Richard A. Lawhern, Ph.D.
    Chronic Pain Patient Advocate.

  9. Dave at 11:47 am

    Tim- thanks. My upcoming book- Pain Care in America- Can’t Get it Right, is focused on the politics of pain care-and leaves no one unscathed when it comes to criticizing the dystopia that pain care has become in the U.S.
    The CDC guidelines are just a part of the problem- and reflect what Jefferson said so many years ago- Confidence is everywhere the parent of despotism. Our confidence in our politburo pain care system has lead to increasingly burdensome, dehumanizing, unsatisfactory and ineffective pain care. The creators of the newly released National Pain Strategy- reflect the same problem- that a few cherry picked politicos and pain specialists should decide for the 110 million Americans what pain care will be for them. So, clearly undemocratic forces have created an iron cage of pain care that hasnt evolved beyond the allopathic model- and a very limited allopathic model.
    The NPS and government- are clearly about standardizing care, limiting choice, and ignoring the values, beliefs, preferences of individuals in pain-both my comments to the NPS and CDC guidelines were ignored. And so our democracy or individualism – our rights as Americans and as human beings are damaged and will be further decomated by the designs of others. We should remember why and how we became Americans-and fight back!
    And if you need me to deal with someone who is giving you a problem with pain care- give me a holler= and ill deal with them.

  10. Randall Heathcoe at 3:25 am

    Leave the doctors & patients alone they are the good people,yes their are good & bad every where If you are sick you do the right thing go to the Dr that is his or her job.if they don’t do right,the police then or. Dea can get them in the streets done deal.let the dea &/ police do their job,Let the Dr & patients do theirs
    It,s called police work.Sorry guys,Now Please ,it can be done & you will learn more,we did it,Trust me it will make you and many others proud.you will get Respect While trying to bring our country back Together.Yes,I know what policemen Make.All of you should make Double pay,I Have been there & My DAD.

  11. Tim Mason at 8:01 pm

    Dave, I will purchase your book. I am also will to distribute any well written flyers, leaflets or pamphlets. I would also be willing to purchase some for distribution at my on expense considering the cost was reasonable for quantity.
    Woman’s Day just ran an article on the CDC’s actions (it was reposted on Yahoo today) which was full of misinformation. It stated that fentanyl was a “street” drug. They stated a statistic that “people that are addicted to pain killers are 40 times more likely to be addicted to heroin” and “2 million people were either addicted or dependent on opioid pain killers in 2014”. The CDC director Thomas Frieden was quoted “We know of no other medication routinely used for a nonfatal condition that kills patients so frequently”. This article mentioned three well know brand names so people could relate the article to someone taking a medicine, OxyContin, Vicodin and Percocet and said they were like the street drugs heroin and fentanyl. The CDC director Thomas Frieden is actually a director of misinformation. I often comment on these articles if the periodical allows. The article I reference he is http://www.yahoo.com/beauty/cdcs-painkiller-guidelines-aim-curb-152350054.html.
    I worked in pharma for 23 years as a research chemist. I was there when the addiction resistant formulations came into existence.
    If I can be of help distributing any professionally written. peer reviewed literature please reach out to me.

  12. BL at 7:17 pm

    Kerry McKelvey, I am a chronic pain patient. I am 62 and I have a number of friends my age that are also chronic pain patients. Most of them see a pain management dr, but some receive their pain meds from their pcp or specialist. I also have a friend that receives SSI for several painful impairments and is about the same age. Because Medicaid in my state will not pay for pain managment of chronic pain and because no pcp or other specialist will prescribe her pain meds, she made the decision to become homeless so she could afford to pay for pain management every month. I have read copies of her medical records and I have gone with her to her drs appointments and gone in the exam room with her. Her not being able to get pain meds from Medicaid drs is due to Medicaid in my state as well as the actions of politicians in Washington like Senator Charles Grassley. I also have a large number of friends in other states. Some of them or their family members are also chronic pain patients. I have worked with drs, lawyers and Judges and I still keep in touch with most of them and see them at social events and religious occassions. I am informed and educated, with continuing education in the medical and legal field.

  13. cynthia at 11:35 am

    can someone recommend some facebook groups, as mentioned by k. McElvey? thank you

  14. Dave at 10:18 am

    @ Michael- we need everyone in pain who believe things need to get better to do their share to promote change. You don’t have to be wise, rich, powerful, smart- you just have to make the effort. You don’t have to march on Washington or carry a banner. You can call your representatives, medical schools, the CDC, the Secretary of Health or write a letter. Imagine if only 5 million of the 110 million in pain made phone calls every year calling for improvement in pain care. So we cant afford to not do something to try to improve pain care- literally our lives and the lives of millions depend on our efforts-and we have the numbers to do it.

  15. Kerry McKelvey at 10:08 am

    BL
    Join some pain support groups on Facebook. If it’s not happening to you thank your Dr’s because they are the very very few not taking opioids off the table or at the very least reducing the prescriptions to non therapeutic doses. And if it’s happening to one of us because of faulty beliefs then it’s happening to us all! What you say in effect is it’s not to the degree that people are concerned will happen. You are living in a bubble. Just about everybody but you have had their world rock already because of these policies and phobias. Please join a Facebook support group and get educated in what’s really happening all over the country.

  16. Cynthia at 9:49 pm

    Very intelligent post by Dr. Lewis….but what is meant by keeping our own data and doing our own research? I think I’ve been doing that for years…how will that help? What can we do to help fix this horrible situation? Someone tell me what to do that will definitely be effective, and I will do it. I am 69, had to retire early due to sitting pain…from spine issues, they say…… I read today, something by a doctor, that said when opiates are withdrawn, it is not known whether the horrible pain is from actual body pain? Or from opiate withdrawal? Well, doesn’t someone need to find this out? Isn’t that a key piece of information?

  17. michael wagner at 9:07 pm

    The CDC is a great example of why people in the US are fed up with our govt. agencies.
    Since I have gotten very old in age I have learned just say no to anything and your job is finished. I am not a Obama hater but I have to say since he has been in office he has put very few people in Government positions that are qualified for the job they are doing for us. They have said for years Ronald Reagan, what a great guy he was. He was smart, he got good qualified people to do the job, and he slept the rest the time and Nancy did most the work. You would think it is unconstitutional to make rulings like this.
    Us people in pain are too weak to go protest, we need to do something, we need someone wise to get this started. I still don’t think this will effect states that have one of those REMS already in place. I know there is Republican states that haven’t done anything, so they are the ones suffering, and states like Florida that there Rep leaders let there DR’s set up 4 or 5 pain Dr’s on each street, they must have voted Rep, what else could have been the answer for letting this go on? Our country, every election you see things like this, hurt the good guy to stop a problem. They suck and each of them need to know this,
    Mike W

  18. Danny E. at 5:41 pm

    Steve M,
    I think somehow my comment was misinterpreted. I agree with EVERYTHING you said. I, too, have been taught biofeedback and relaxation techniques and, other than helping my extreme tension when I’m having my worst pain, they don’t help reduce the pain at all. I’m sorry for the confusion. I fight with my insurance company for the meds my Dr. prescribes, I suffer every day with severe pain (for 25 year) and the point I was trying to make is I’m afraid it’s only going to get worse, in terms of CDC and DEA oversight. I’m sorry for the suffering that you and your wife are enduring. And I’m right there with you on how hard it is to live this kind of life.

  19. Dave at 5:16 pm

    Jean- as i believe people in government and health care often have attachment issues- and excessive attachment-not to mention narcissism they are unlikely to admit they made any mistakes and less likely to change their ways. They call it the curse of knowledge- i call it the enlightenment curse. They believe they are right by virtue of their belief in enlightenment philosophy. And since they have convinced themselves they are right in principle they have convinced themselves they are right in fact. And like that enlightenemtn figure indicated- dobt is uncomfortable- certainty is ridiculous. For them to entertain serious fundamental doubts is just too unconcerting for them to bear-and so they refuse to bearit- regardless of the cost to others.
    But this is just one side of the equation- just how much folly and suffering will Americans in pain bear before throwing off the burden they are forced to bear. It seesm too many are too willing to suffer in silence and lead lives of quiet desperation. Americans in pain have long since forgotten the memory of freedom and the memory of why our NAtion was formed. And if youre going to get far with pain then you need to know how to fight hard and well. I dont think many people in pain are good fighters- and that is why my third book on pain will be on “fighting back”- learning how to fight the good fight against ones pain and to fight the tyranny of our pain care system.

  20. Jean Price at 4:57 pm

    As the article suggested, the CDC may see their solution isn’t working regarding overdoses and drug addiction in a short time…but will they then amend it in ways to help people with pain? Or will they truly notice it, since it would make sense to evaluate and they don’t seem to be very good at doing sensible things well! So, I see it getting worse, I’m afraid. And many people with pain say they won’t live long…this scares me for them and their families, but also for the rest of us in pain. I think the CDC will use those deaths to eventually pronounce chonic pain a mental disease, as is addiction. Then where will we be? To those of you on the edge, I’d say please back up enough to survive and don’t let them win by your death. But I’m not sure that’s fair to say, we can’t walk in another’s shoes…the best we can do is walk alongside and everyone’s situation is different. I will say, find a buddy, maybe one who also has pain. And make a contract that you won’t take that last step over without talking with them. Find some way to hold on, because we all know tomorrow might just be a little easier or the next day. Then get as far away from the edge as you can, and stay with us. Please.

  21. J Peer at 4:11 pm

    I want to know why the government, the very people we employ, rule over health conditions and treatments? Since when did the CDC decide they know what path is better for my condition than my own physician? They have far too much power. There are conditions and diseases as painful or more painful than cancer. Yet the patients’ medicines will be taken away. When did we become a communist country?

  22. Tim Mason at 3:46 pm

    The guidelines reportedly said “Primary Care Physicians”. It has been this way for quite some time where I live.
    I don’t feel it is intended to affect specialists in pain management and their prescribing regime. Probably what is at risk are people in rural areas that have no pain specialists near by and would now have to travel an hour or so the get treatment.

  23. Michelle Ziemba at 11:58 am

    BL,

    It’s already starting to affect pain specialists. These guidelines aren’t meant just for primary care doctors. Doesn’t matter if you follow your contract or your dosage. What about flare ups? Or insurance companies requiring med changes? Or when a brand name drug goes generic? These scenarios all play havoc with me and many others. It’s a constant battle. Why are we the ones that have to fight our diseases and the right for reasonable care too?

    Michelle

  24. Michelle Ziemba at 11:53 am

    Danny,

    Somewhere, in the midst of verbiage, these guidelines are also designed to apply to all healthcare workers, including physician assistants and pain specialists. I believe they used primary care doctors’s “confusion” about opioid prescription as their reason to start this business.

  25. Steve M at 11:32 am

    Why are addicts more important than my wife? Why are they more important than me?

    Danny E
    If you read the CDC website, it very clearly states their opinion, that non-cancer pain doesn’t deserve treatment.

    I have cancer pain and non-cancer pain, so I get nothing. I was abruptly cut off from 500mcg/hr Duragesic and 180mg/day oxymorphone/Opana (twice as strong as oxycodone) due to rules like this.

    For many of us, those therapies you mention do not work. My wife and I have both tried EVERY non-opioid option because we didn’t want to be on opioids unless absolutely necessary. My wife and I did 12 and 9 months (respectively) of a combined PT, aquatic PT, and occupational therapy program 4-5 days per week. We don’t take opioids because they’re the most convenient option, they’re the only effective option.

    These guidelines will be applied to PMs. Also, many of us have can’t go to a PM because they don’t prescribe, don’t take Medicaid, and/or aren’t necessary. I was stable on that dose for years, my PCP took over the refills because there were no PMs available.

    Also, many cancer patients don’t have an oncologist (not that all of them wrote prescriptions anyway). Radiation Oncologists, Neurosurgeons, and neuro-oncologists (usually a subspeciality of Neurosurgery) never prescribe opioids.

    These guidelines are NOT benign.

    Even the PROP petition that the FDA rejected hurt us. After PROP posted their guidelines, 75-90% of doctors started quoting it, even when the appointment was unrelated to pain (just while reviewing a medication list that exceeded the guidelines).

    The reason for the increase in opioid overdoses is not liberal prescribing, it is prohibition. The lack of available prescription opioids has caused addicts and pain patients alike to buy their meds on the streets and the recent crackdowns have pushed many obedient patients to the street, Erich is Now flooded with Heroin to fill the OxyContin void. Unfortunately, heroin strength (concentration) is very inconsistent, which leads to overdoses, which cause death and addiction.

    Also, MANY patients get kicked out of offices WITHOUT violating their pain contracts. Missing one appointment can be enough, which is easy to fake (schedule an appointment without telling the patient).

  26. BL at 11:05 am

    I don’t think that current patients with severe chronic pain that are seeing a pain managment dr, keeping their doses low and going by the rules will be affected. But, I do think that this is a message that for those that have chronic pain in the future that they won’t be able to get pain meds like current severe chronic pain patients do now. When someone has an injury or an illness that causes pain for the first time, the first dr that they see is not a pain management dr, it is their pcp. The pcp is the first dr that prescribes pain meds. Also, pcp’s and other drs aren’t specially trained in Pain Management like Anesthesiologists and Pain Medicine Drs are. You wouldn’t go to a Rheumatologist to set and take care of a broken leg.

  27. Alvin Hill at 10:21 am

    These developments would be bad enough, if all of the players involved were genuinely concerned about the welfare of patients – but they are not. Organizations like the DEA have for many years worked to abolish the use of opioids for any purpose, including therapy for chronic pain. It’s a religion for them, a matter of ideology; and they neither know nor care how many people are grievously harmed by the policies they promote. Dr. Lewis is absolutely right, that we must rely on ourselves to conduct or sponsor valid outcome studies. In the first place such studies are notoriously difficult to design and interpret. In the second place anti-opioid zealots have no interest in honest evaluation of the results of their actions.

  28. BL at 9:52 am

    I don’t see where this will affect those with severe chronic pain that are seeing a pain managment dr and are going by their pain contract. The public comments made a few months ago prove that those not having their severe chronic pain treated adequately are not the overwhelming majority.

    If someone is having problems having their severe chronic pain managed adequately, they need to look at their doses, if they are seeing a pain managment dr and if they have signed a pian contract if they are going by the rules.

    I do wonder why the people that wrote these guidelines think that all insurance covers accupuncture, PT, etc. Most insurance doesn’t cover accupuncture and other methods and the criteria for PT can be strict. If the cost for these things were the cost of a pain med prescription, that would be one thing, but they aren’t. Demands need to be made NOW to our federal and state politicians that All insurance cover the cost of non medication forms of chronic pain management. It would be interesting to see what, if any difference it mades, since those demands would be based on these new guidelines. The laws, guidelines and rules for prescribing opiates are only going to get stricter. Chronic pain patient need to demand that other forms on managing their pain are covered by insurance like pain med prescriptions are and that research into chronic pain is funded along with the treatment of drug addiction. If you compare the money that has been spent on researching the treatment of chronic severe pain to that spent on drug addiction, it is unbelievable.

  29. Shirley hinton at 7:24 am

    Sitting here as I write with this pain I am forced to live with makes this all to real . I cannot escape it . As it is I have to limit the medications I take for several reasons . More and more this pain stays with me .I become more stationary , because of it . I know that isn’t good . I was once very very active, always doing starting, helping others . Started business successful one . Had to give up . Just when after years of building had a grear following. At 50 I aquired this puzzling disease …..fast forward now I have constant pain I am thankful to be home , married 44 years, have a secure home, But like today it’s my husband’s birthday ..we want to celebrate , he is home today , so maybe go out to have lunch. Simple ? No, I am in pain have to start early to try and p us it away with meds ..slowly try to see the l east amount I can take to be ab l e to be with my husband the last few years we have after rasiing four children .Time for us ..but I have chronic round the clock pain . I suffer . It’s even worse the pain I feel to gave to take from my husband happiness because I suffer with pain . So now this is just one of the many many obstaclessons I face. We face . You the CDC THE DEA MAKE MY LIFE WORSE , BY TRYING TO TAKE ANY HOPE I HAVE OF A SOME WHAT NORMAL LIFE .
    I HAVE BEEN TO TOP DRS. TOP PLACES IN ATLANTA , THEY CANNOT HELP ME , THEY HAVE TRIED . BUT YOU KNOW BETTER ? Realize fellow human , you are doing this with the results possibly if taking any hope I have of being some what normal . You know nothing of my life , the efforts I made throughout to do good and make a beautiful happy well rounded life for myself and others . Is that right ? Your doing wrong ..you are doing HARM .

  30. Danny E. at 6:27 am

    There is tremendous ambiguity within the guidelines released by the CDC. Supposedly, these guidelines are intended for General Practice physicians. And, by stipulating that only pain resulting from cancer qualifies for opioid medications medications as opposed to severe, chronic pain caused by any other condition or injury, how long will it take before the CDC applies these same prescribing restrictions to any doctor who is not an Oncologis? I can see where pain management specialists will be reduced to training chronic pain sufferers to only using biofeedback and relaxation techniques, while simply taking ibuprofen or aacetaminophen. But, there’s the rub: excessive use of either of those medications can cause organ damage, so won’t there be an outcry against them as well?

    This is just another example of government overreaching into areas in which the decision-makers, made up of political appointees and academics who deal in theory, have absolutely no first-hand experience with severe, chronic pain. While I wouldn’t want anyone to have to live on a daily basis with the type of pain I’ve dealt with for 25 years, I do wish those who formulated these guidelines would have to experience one full month of my non-cancerous pain. If that were to happen, I guarantee these guidelines would appear far different than the current version, if they would even exist at all.

  31. Martha Arntson at 6:24 am

    Terri. I commend you for writing exactly how many of us feel in such a clear and concise way. I excerpted this from your writing:
    “The only way I see to get past this one is for patients to take control of their data and conduct their own research.This is a tremendous opportunity to learn on many levels. The question is whether the risks to patients outweigh the benefits to the public at large. There is almost nothing that is less fruitful or fair than forcing persons who have grave pain related conditions to live without effective care.”

    I take control of my situation by researching and reporting back to my pain management doctor. Just yesterday I took her many articles related to the ridiculous CDC ‘guideline’ that is being pushed upon us with absolutely no input from the patients who suffer chronic pain.

    Thank you again for your article. I will absolutely copy this for my doctor as she likes to be informed from her patients as to where we stand on issues such as this.

  32. Kr at 5:39 am

    They need to go harass the criminals and junkies and leave those of us in,pain alone.quit grouping addicts in same category as pain patients. There is a simple solution DO BACKGROUND CHECKS on patients ALL PATIENTS and get rID OF or deny service to those who have criminal drug CHARGES. ISN’T THAT EASY???why would they torture millions of good people without even knowing if they r truly in pain or a criminal dealer first? I know because whoever’s this idea was in,the first place to go after innocent people is a sociopath or narcissist..and the rich have no,common,sense and will go with anything anyone says..and my dad had cancer and didn’t even need pain meds.